ketogenic-diet-for-epilepsy

Tomas’ Epilepsy & Medical Ketogenic Diet Journey

The Ketolicious Kid, Epilepsy Warrior (aka: Tomas, the baseball player)

ketogenic-diet-for-epilepsy

Tomas is 4 ½ years old. He loves everything baseball, outdoors and his family. He says he’s going to be a baseball player when he grows up and that we’re all going to see him on TV one day. He is my 3rd child, the sweetest of all my kids, the baby of the family and the one that was supposed to be on auto-pilot. Tomas was the best baby. He got dragged around everywhere that his older siblings had to go: school events, soccer practices, gymnastics competitions, etc. He was a typical baby and toddler, and everything was perfect, or so it seemed. I’m not sure when, but I started feeling that there was something off about him, something different than my other kids. I didn’t know how to describe it and people told me I was crazy. So, I tried to shake the feeling, and convinced myself everything was ok. Until …. April of 2018.

Epilepsy Diagnosis

We were at my parents’ house celebrating my sister’s engagement. Her fiancé was about to give a toast when, THUD, Tomas collapsed. He was having a seizure, a BIG one. It lasted about 3 ½ minutes but it felt like an eternity. What came after was worse than the seizure itself. He was lethargic and confused, talking but not making sense and then fell into a deep sleep. I watched him all night. The next day he woke up as if nothing had happened – talking, playing, asking for breakfast. I was so relieved, but it was short lived. As I set his breakfast down, he had another seizure. I rushed him to the hospital where he was admitted. There he underwent a series of tests (VEEGs, MRIs, blood work), and we were acquainted with all the -ologist and -icsts the hospital had to offer. We were told that he had epilepsy. The VEEG showed he was having 3 types of seizures (I didn’t even know there were 3 different types of seizures). It was happening all the time and we didn’t even notice. They threw out a few terms for possible diagnoses, said further testing was necessary, put him on anti-epileptic medications and sent us home with instructions to follow up in a week or two.

Intractable Epilepsy

ketogenic-diet-for-epilepsy

The next four months were a blur of increasing seizures, neurologist appointments, VEEGs, and changing and adjusting medications with little to no improvement in seizure control. All the testing came back negative and there was no explanation for his seizures other than “intractable” or “refractory” epilepsy (meaning not responding to medications). We were losing our little boy; he was in a fog of medications and seizures. This was when doctors suggested the medical ketogenic diet as a way to help manage his seizures. They told us that it would involve an initial hospitalization of 1 week and then a strict diet, in which I would have to measure food to the tenth of a gram (0.01 g) for the foreseeable future. I was skeptical. I felt there was NO way that I’d be able to feed my child in this way, especially working full-time and with the crazy hectic life we lived. But I was also desperate and willing to try anything.

The Medical Ketogenic Diet

We started the ketogenic diet in the hospital on August 20th. We had a rough start; Tomas did not tolerate the diet well at first. Thankfully we were working with an amazing team of neurologist and dietitians through the hospital’s Keto Clinic that knew just what to do. Instead of starting at our goal ketogenic ratio, we started the diet gradually. We began with the Modified Atkins Diet and worked our way up to the goal ketogenic ratio slowly, allowing Tomas’ body time to adapt. It took several months, from August to December, to work up to where he needed to be. Those months were difficult. Every few weeks we were changing ratios and adapting meals, tracking his weight and monitoring seizures. I wanted to quit on many occasions, but what kept me going was the small changes I started to notice in Tomas. Although he was still having seizures, the fog seemed to be lifting. I’d get glimpses of who Tomas used to be. This was the trend: small improvements and fewer daily seizures, until January 27th when my husband and I realized that we hadn’t recorded a seizure since December 22nd!!! Fast forward to February 14th – Tomas had his first “normal” 24-hour VEEG since his epilepsy diagnosis.

Tomas Today

Tomas is currently on a 4:1 ratio ketogenic diet and has been seizure-free for 3 months. I am so amazed with how the ketogenic diet has changed our lives. I meal prep weekly for the family and plan out Tomas’ daily meals in advance. I own multiple gram scales and more silicon molds and spatulas than I can count, but I wouldn’t have it any other way. I’ve learned to cook/make things I never thought I could, such as keto bagels, pizza, and even blueberry muffins (thanks to KetoCal®). We are lucky to have resources out there like KetoCal that make a restrictive diet feel not so restrictive and make it easier to be a mom to a Keto Kid. We juggle soccer, baseball and gymnastics, eat out, and travel. I didn’t think we would be able to do these things with such a restrictive diet, but I have found that it just takes a little prep work and creativity. Yes, there are still hard days with managing the diet, but the benefits outweigh the challenges. I never thought that our quality-of-life would improve the way that it has. I’ve met amazing people on similar journeys to ours and had opportunities to help others (like writing this blog post).

Advice for Others Struggling with Intractable Epilepsy

My advice for anyone out there suffering from seizures is to give the ketogenic diet a chance. Ask your medical team if its right for you and your family. Be patient and take it one gram at a time, one meal at a time, and one day at a time. Find support and don’t go at it alone because you are NOT alone. There is a huge keto family out there eager and willing to provide advice and support, you just must know where to look. And if you’re reading this now, you are already on the right path. Who knows in what ways the ketogenic diet might improve your life. Good Luck!
Below are some links to some helpful sites and groups:

– Lourdes

I was paid by Nutricia for my time to write this blog post, however, my opinions are my own.
KetoCal is a medical food and is intended for use under medical supervision.

To learn more about the medical ketogenic diet for the management of intractable epilepsy, visit www.ketogenicdietforepilepsy.com.

tips for ketogenic diet for epilepsy

Keto Parents’ Advice for Families New to the Ketogenic Diet for Epilepsy

tips for ketogenic diet for epilepsyIs your family new to the ketogenic diet for the management of intractable epilepsy? If so, you may be looking for tips and suggestions to help you manage day-to-day. Oftentimes, the best advice comes from others who have been in your shoes. Using our social media accounts, we asked keto parents about what advice they would offer other families new to the ketogenic diet. Here is what they said*.

“Patience is key. So is persistence. It took 10 weeks of fine-tuning the diet ratio to completely stop our son’s seizures.”

“Simplicity! Don’t overwhelm yourself with a ton of recipes. Or recipes at all for that matter. Start with a few things while becoming familiar and expand as you feel comfortable. My son ate the same things nearly every day. Also, if you reach seizure freedom and it’s interrupted, don’t get discouraged!!! It’s the worst feeling ever but try to stay positive! My son started the diet at 3 and was on it for 2 years. He’s 15 now and seizure free.”

“Take your time, do your research, ask all the questions! This is a lifestyle not a quick fix. But it is totally worth every second 👌👌 My twins have been seizure free for over a year! Make it simple & as time goes on it gets easier! ♥♥♥”

“Don’t give up…work with dietitian and neurology to fine tune! I believe it works but one needs to be patient and work with your whole team!”

“It’s not as hard as you think”

“Take a deep breath, smile and buy a scale!!!!!”

“One step at a time.”

“Keep it simple, ask for help, be patient 💜💜”

“Go slow it’s a marathon not a sprint.”

“Never give up. Weigh and measure precisely.”

“Go to a place that has a keto clinic with a specially-trained dietitian and neurologist.”

For more tips on managing the ketogenic diet, check out these blog posts:
A Ketogenic Dietitian’s Tips for Families Getting Ready to Start the Ketogenic Diet
Time Management Tips for Keto Moms and Dads
Tips for Caregivers of Tube-fed Children & Adults on the Ketogenic Diet

-Mallory

*Results with the ketogenic diet for the management of epilepsy may vary. Talk to your healthcare professional.

The ketogenic diet for the management of intractable epilepsy should be used under medical supervision

To learn more about the medical ketogenic diet for the management of intractable epilepsy, visit www.ketogenicdietforepilepsy.com.

Keto-friendly Thanksgiving & Holiday Recipes

Thanksgiving and holiday meals tend to be food-focused. This can be stressful when you or a loved one is on the medical ketogenic diet for the dietary management of intractable epilepsy. However, with KetoCal® and a little extra planning (okay, maybe a lot), you can put together a delicious and keto-friendly holiday feast. Reach out to your ketogenic dietitian far in advance for help putting together a meal that meets your calorie and ratio requirements. Here are some delicious and keto-friendly recipe ideas to get you started.

For Hanukkah recipe Ideas, see our previous post here.

Main Course:

Every family has their own traditions when it comes to main courses for holiday dinners.  Whether ham, beef, poultry or fish is served, be mindful of rubs or glazes that may contain carbohydrates.  You can use  butter or a high-fat sauce to even out the ketogenic ratio. For example, you could create a creamy gravy using heavy cream or Liquigen® (emulsified MCT oil), mixed with chicken or beef bouillon granules.

Most families serve turkey on Thanksgiving. If possible, opt for dark meat since it has a higher fat content.  If you’re up for something a little different, consider these turkey dishes that are already in a 3:1 ketogenic ratio:

Side Dishes:

For many, side dishes are the best part of the meal! Here are some tasty and keto-friendly options:

Chef Rachel’s Stuffing (3:1 recipe, 4:1 recipe)

Chef Rachel’s Green Bean Casserole (3:1 recipe, 4:1 recipe)

Chef Rachel’s Mashed Fauxtatoes (3:1 recipe, 4:1 recipe)

Chef Rachel’s Sweet Fauxtatoes (3:1 recipe, 4:1 recipe)

Cauliflower & Cheese (3:1 recipe, 4:1 recipe)

Dessert & Treats:

Who could forget the sweetest part? Whether you’re looking for a keto-friendly dessert for your holiday feast or holiday cookies to decorate, we’ve got you covered.

Crustless Pumpkin Pie (3:1 recipe)

Chef Rachel’s Apple Crisp (3:1 recipe, 4:1 recipe)

Basic Cookies (great for decorating with food coloring or “keto sprinkles” (granulated stevia with food coloring)) – (3:1 recipe, 4:1 recipe)

Gingerbread Cookies (3:1 recipe)

Chef Rachel’s Chocolate Chip Cookie (3:1 ratio)

Crème Brulee (3:1 recipe, 4:1 recipe, MAD recipe)

Chocolate Ice-cream (3:1 recipe, 4:1 recipe, MAD recipe)

Vanilla Ice-cream (3:1 recipe, 4:1 recipe)

Chocolate Cupcakes with Chocolate Frosting (3:1 recipe)

Vanilla Cake Pops (3:1 recipe)

Chocolate Cake Pops (3:1 recipe)

Strawberry Panna Cotta (3:1 recipe, 4:1 recipe, MAD recipe)

Chocolate Candy (2.87:1 recipe)

Chef Rachel’s Easy Chocolate Pudding (3:1 recipe)

For more tips on managing the holidays on the ketogenic diet, see our previous post here.

From all of us at KetoCal, we wish your family a very happy, healthy and tasty holiday season!

Mallory

KetoCal is a medical food for the dietary management of intractable epilepsy and is intended for use under medical supervision. Talk to your healthcare provider to determine if KetoCal is right for you.

The medical ketogenic diet for epilepsy should be used under medical supervision.